Bone Marrow Stem Cell Transplantation for Thalassaemia

You may be aware that recently a permanent cure for Thalassaemia is
been reported from many countries around the world by using stem
cell therapy from Bone Marrow & umbilical Cord Blood transplantations.

There are around 4000 thalassaemia major children and 500,000 Thalassaemia carries ( Traits ) in Sri Lanka . Most are not aware of the carrier status. We have recently formed an organization , called the “ Lanka Thalassaemia Circle” , comprising of Thalassaemia patients , their parents & well-wishes, to fight for the neglected rights and for a definitive treatment of these Thalassaemic children. It is affiliated to the Thalassaemia International Federation (TIF) in Cyprus & membership now totalling around 3000.

One of the primary objectives of this Thalassaemia Circle Sri Lanka is to detect & confirm the Thalassaemia carrier status of Sri Lankans and the other to obtain quality medication for these unfortunate children from the health department .

After testing nearly 500 antenatal mothers with Haemoglobin levels unexpectedly below 10 g % , with HPLC, I was shocked to discover that 47% of them in Kurunegala & 31% in Kandy , unknown to then , where Thalassaemia carriers

Thalassaemia Major children need blood transfusions monthly , lifelong , along with iron chelation almost daily to reduce the iron overload. From the second year of their lives these children will need 10 – 15 vials of medication each month ( Monthly expenditure Rs. 7200 /- , Annually Rs. 86 , 400 /- ). { each vial costs Rs. 740 /- } At 20 years a patient will need 100 – 110 vials per month( Monthly expenditure Rs. 72 ,000 /- , Annually Rs. 864 , 000 /- )

The total cost for medication for a 25 year-old thalassaemic child will be Rs. 17, 094, 000 /- if on Desferrioxamine injections or Rs. 6, 421, 800 /- if on oral medication

Every year the Health Department spends Rs. 1700 million on Thalassaemia medication alone. This is 7 % of our national health budget. Upto now there has been no known cure .. Most die at a younger age due to severe complications of iron overload ( the eldest in Ampara is only 17 years ! ) .

Pre-natal diagnosis ( to diagnose Thalassaemia early in the first three months of the next pregnancy ) by amniocentesis , is performed by us in Kandy , in the private sector , FREE-of-charge , except for the laboratory fee, on mothers with previous Thalassaemia children now pregnant for the second time. Samples are sent to either Genetech laboratory or Asiri Surgical Hospital , Colombo. 50 amniocenteces have been performed so far .
The main cure available today for Thalassaemia is Bone Marrow Transplantation (BMT) from compatible donor (a matching sibling),invented in the 1980′s, by Prof. Guido Lucarelli , Director, Mediterranean Institute of Hematology , ROME , Italy. He and his team have done more than 1,500 BMTs for thalassemia (about 50% of all the BMTs done in the world) in the last 30 years. These stem cells can be used to cure many other diseases including myelomas , leukaemias & other cancers.
When I met him in Rome in October 2012 he spoke of the possibility of setting up a bone marrow stem cell treatment centre in Sri Lanka . Prof. Lucarelli has instituted such centers in five African countries

Bone Marrow transplantation ( BMT ) for Thalassaemia will require a 10 / 10 matching of human leukocyte antigen (HLA) between the patient and the donor. As HLA molecular typing is still not available in Sri Lanka , we have sent the first set of 100 ‘cheek swabs’ to a Genetic Laboratory in New York , USA , on 19th September 2013 , at the request of the President , Bone Marrow Donor Programme , Singapore and academics at the National University Hospital Singapore. The second set of 100 , were sent to USA on 18th Oct , a third 100 on November 17th , the fourth 100 on 16th December and the fifth from Batticaloa on 21 August 2014. As BMT needs re-confirmation of the compatibility results from a second internationally accredited laboratory , second samples were sent to a genetic laboratory in Germany

This particular laboratory was recommended to us by Dr. Lawrence Faulkner , medical director of the Cure2Children Foundation , one of the largest international NGOs’ dealing with thalassaemia worldwide and Haematologist TIF , who visited Kurunegala recently & addressed the membership of the “ Lanka Thalassaemia Circle” . Dr. Faulkner has established Bone Marrow transplantation centres in Jaipur , India & Islamabad , Pakistan , where successful therapy had been instituted at one tenth the cost in a Western Country. .

ASIRI Surgical hospital , have signed a Memorandum-of-Understanding with the Cure2Children Foundation, to undertake treating six thalassaemic children with BMT , free-of-charge , in exchange for training its staff on this procedure. At the request of the ASIRI management we have handed-over six of our matched patients & siblings and commencing from 4th June 2014 four BMTs have been successfully performed so far.

Your unwavering blessings in establishing this treatment modality successful in Sri Lanka will be immensely welcome